Just Another Quarter Mile

A humorous story my son Spencer loves to share from his young scouting experience comes from a hike in the nearby mountains. As anyone who has taken scouts - or any kids - on a hike you’ll often hear the refrain “‘how much longer’ or ‘how much further’ do we have to go?” On this particular hike, with the various switchbacks and lengths of trail, some of the youth began asking the all to familiar question. The response from a leader was “about a quarter mile.”

This of course heartened the kids knowing it wasn’t all that much longer and they’d be done with the hike and transition to the fun of enjoying the destination. That’s the payoff after all, right?

After seemingly miles and far too many minutes later, the boys again asked, “how much further NOW?”

The response was again “just about a quarter mile.” I like to imagine this being said with a slight smirk and a wink to another adult nearby.

It didn’t take long for the older kids to catch on to what was happening, and likely not much longer for the rest to get it as well. So the joke from then on and for years to come was that it was always just another quarter mile to the the end.

My father was a lover of all activities that involved outdoors. Fishing, hunting, backpacking, camping, hiking. It didn’t really matter as long as it was outside. And frankly, he was good at all those things too. He would always quip, “A bad day of fishing is better than a good day at work.” And while said in jest, I have no doubt he believed it. When my father passed he requested that his ashes be spread over his favorite mountain, Crown Mountain in Montana near the family cabin. His rock memorial sits next to his father’s that is there for the same purpose.

As my youth included many days and weeks spent with so outings into the great outdoors. I experienced my first 100 miler trip in Montana when I was 10, joining the scout high adventure at a younger age because my dad was the scout leader putting it all together. Many 50 mile treks and almost countless other hikes were added in the years later.

Photo courtesy of George Loch

Spencer’s story always reminds me of that feeling I get when hiking a seemingly endless trail up a steep mountain. Long winding trails through woods and opening to meadows and eventually climbing the seemingly endless switchbacks up a mountain would always invite the feeling of almost reaching to the top. Knowing the payoff was near, you’d feel that second wind and bounce in your step, the backpack feeling maybe even a little lighter.

Looking ahead you can see the final rise that looks like the top of the climb is there. You round the corner with that growing sense of triumph building in your chest, ready to stake your claim as the latest to conquer the mountain. Then, finally as your view opens up, only to see another peak ahead.

The journey isn’t over.

In fact, some of the hardest climb still appears to be ahead. Ugh. Time to sit on a rock and think about what you’ve gotten into.

The Scan Results Are In

As I mentioned in a couple of previous posts, this week was my latest CT scan arriving at almost exactly the one year mark since I began treatment. The oral chemo drug I’ve been taking Gleevec has been expected to be a long process, so regular scans were postponed to allow for sufficient time to act and hopefully show a measurable difference.

At the four month mark we had a scan, and it showed “marked decrease in size” with pockets of degradation in the tumor. Very promising and something that has motivated me to keep strong in all my healthy efforts to aid in the hopeful success of the drug treatment. Despite experiencing continual side effects from the drug, knowing it was doing good made it all feel worthwhile.

I headed into this newest scan with some trepidation but also some strong expectations. I’ve been working extremely hard at being healthy. 5-6 days a week with daily workouts. Healthy eating with good foods and avoiding processed foods, sugars and indulgences. While I set my mind to knowing many possibilities existed and were even likely, of course I hoped to see great results.

So today I’d like to report that the tumor has taken a beating, that it is much smaller and the drug is working it’s wonders inhibiting growth and making the eventual surgery a much closer prospect. I’d like to say it’s making that BFT much more like a LFT, taking up much less space in my abdomen and staying away from the nearby organs and important bits and pieces of my gut. I’d really like to say that my scan was showing something amazing taking place, downright miraculous.

I’d like to report all that, but I can’t. In fact it’s sadly quite the opposite.

The radiologist report came back that the tumor is about the same size as a year ago. In some ways that may actually sound kind of ok, because it’s not significantly larger. Unfortunately this result tells us a couple of likely things. First, we lost the ground we gained in those first four months. The ~15% shrinkage we saw previously has grown back, meaning while portions of the tumor were affected by the drug as hoped, the resistant portions appear to make up the bulk of the tumor mass and have continued to grow. This means that future resistance and growth is likely.

Second we’re not quite sure yet what this means for the opportunity to have surgery to resect the bulk or all of the mass. The tumor still completely envelopes my spleen. This means if surgery is deemed possible, I’ll likely lose the spleen. That’s not great, but we can live without a spleen. The question is if the surgical oncologist thinks this surgery can be done safely and successfully. That’s information I don’t have yet.

My oncologist is meeting with their “committee” on Tuesday. This is where all their experts get together and review my updated situation and weigh in on the best path to take. Do we keep treating with the drug and measure again soon to see what’s happening? Is our surgery window closing and we need to act faster to get ahead of the inevitable continued growth? Is surgery even possible now considering the size and invasiveness of the tumor? All of these questions are yet to be answered.

There are no other drug, chemo or radiation treatments known to be effective on my tumor type. Stubborn bugger. So mostly it sounds like trying to be as healthy as possible and continuing on the oral chemo are my primary options outside of surgery. My preference is surgery if they will do it. Cut this thing out and at least get me back to a much smaller tumor presence in my body.

Tuesday is when I hope to hear more of what they recommend. From there we hopefully have some good options and decisions to make. If not, perhaps we need to pursue more opinions and options.

Photo courtesy of George Loch

The Journey Is Not Over

So like in my original analogy, the climb is not yet over. After first looking at the scan imagery and later getting my initial impressions confirmed by the doc, I was pretty rocked. This was not the results we were looking for. It took me several days to get my head on straight again and wrap my mind around this new reality. Frankly it felt a lot like when I was first diagnosed.

Here I thought I had been nearing the peak of my climb, only to round the corner and find out there is much more left in the climb. In fact that climb looks like a sheer cliff at the moment, and I was a much better hiker than I ever was a climber.

While I continued my daily routine with my workouts, family activities and going to work, frankly I was pretty ineffective. I’m grateful to my coworkers for their patience and picking up the slack on some heavy deadlines because try as I did, I know I was barely effective if at all.

It took several sessions of long walks with Heather and some quiet time during my fitness efforts to come to a better mental place again. It was finally during my regular Bikram Yoga session on Friday that the “quarter mile more” and continued journey came to mind and I found some peace. While this isn’t the results we hoped for, it is just another peak to climb in the journey. The challenge is greater than we hoped and expected, but once again we have a choice. I have a choice.

Curl up and be a cancer patient or fight. I choose to continue to fight. Rise to the challenge once again and keep fighting for every bit of what is possible. Live each day to the fullest and seek to beat back this cancer within.

So today I’m back up off of that rock where I was catching my breath and contemplating what lies ahead. Adjusting the straps on my backpack and hitching up the hip belt to ride just so, I’m once again putting one foot in front of another and headed up the trail. No matter the news I receive on Tuesday, I’ll keep pushing forward for the best possible outcome and enjoy the journey along the way. Because as I learned sometime during those youthful years on various hikes, it’s not just about the destination but also enjoying the adventure along the way. Looking up to see the surrounding mountains, the feeling of entering a lush meadow and taking a family of deer by surprise.

This is the reminder moments like this give me and I recommit to continue that effort. I plan to try and do more with my family and make those more memories along the way. To perhaps work a little less and do a little more whenever possible.

This is also what it means to live, and I choose to live.